Link to ARIKAYCE (amikacin liposome inhalation suspension) Patient Website.

Real patients reflect on what they wish they had known sooner on their MAC journey. See how their insights may help you on yours.

MAC=Mycobacterium avium complex.

Select a patient story below

Julie, real patient
Sue, real patient

Watch Julie's story about partnering with her doctor and scroll to read more from her journal

This is Julie's journey. Your experience may be different. Talk to your doctor if you have any questions or experience any side effects.

Transcript

Welcome to Looking back on MAC, where you'll hear from real people who are ready to share what they wish they had known sooner on their MAC journey.

So watch as they share their journals and reveal what they've learned as they look back—to help give you inspiration as you look forward.

Hi, I'm Julie. I'd like to share what I wish I had known sooner on my MAC journey, so I'm going to read from a journal that looks back on my time with MAC lung disease. The first time I tested positive for MAC was many years ago. Back then, most doctors didn't have as many resources about MAC lung disease available to share. So my doctor started me on multidrug treatment, but neither of us really knew what to expect. It was a really long journey, and sometimes I felt like I was traveling it on my own. It wasn't until 3 years later that I finally tested MAC-negative. Unfortunately, that didn't last long. A year and a half after getting MAC-negative, I tested positive for MAC again. But by this time, doctors knew more about MAC. I started seeing a new infectious disease doctor who was more familiar with treating it. At my first visit, she asked me how I spent my days, then coordinated my appointments and my monthly sputum checks so that I could keep doing the things I loved. That's when I realized how much of a difference a strong doctor-patient partnership could make. I've always been the kind of person who tries to give it her all, whether it's cooking my favorite dish, cheering on my alma mater, or mastering mahjong. So I was excited to see that my new doctor approached my treatment the same way. She helped me understand what to expect with multidrug treatment and why I needed ongoing monitoring while I was on treatment. It was a relief to have a doctor who saw me as a whole person. She wanted me to test MAC-negative as much as I did. That's when I knew my experience would be much different this time. When I continued to test positive for MAC after more than 6 months of multidrug treatment alone, my doctor could tell I was discouraged. Although I understood the plan was for me to add ARIKAYCE to my multidrug treatment, I had a lot of questions about this treatment, and any potential side effects that I may experience. She patiently answered all my questions, and when I left her office, I said to myself, "I can do this." When I got my first MAC-negative test, I think my doctor was as happy as I was. After all, we did it together. Even now, my doctor remains highly engaged, and caring, and supportive as I continue the plan we have made together: staying on ARIKAYCE with multidrug treatment for 1 more year after my first MAC-negative result, and continuing monitoring and sputum checks. She also shares any new information she has about MAC and makes sure to keep me up to date. Looking back now, I realize it has made all the difference in the world to have a doctor who supports me every step of the way.MAC lung disease can be challenging, but I learned that having a great partnership with my doctor can help me face the challenge. This was Julie's experience. See what other people with MAC wish they had known sooner on their journey, so that their insights may help you on yours.

julie's perspective on her diagnosis
julie reading a book

Individual results may vary.
Julie was compensated for her time.

julie's perspective on her mac journey
julie reading test results

The first time I tested positive for MAC was many years ago, when there were not as many resources for MAC lung disease available.

My doctor started me on multidrug treatment, but I did not really know what to expect.

It was a long journey and sometimes I felt like I was traveling it on my own.

It wasn't until 3 years later that I finally tested MAC-negative. Unfortunately, that didn't last. A year and a half later, I tested positive for MAC again. But by this time, more was known about MAC and I started seeing a new infectious disease doctor who was very familiar with treating it.

At my first visit, she asked me how I spent my days, then coordinated my appointments and monthly sputum checks so that I could keep doing the things I loved.

My doctor involved me in creating the plan for my care and I knew my experience would be different this time.
julie playing mahjong

I've always been the kind of person who tries to give it her all, whether it's cooking up my favorite dish, cheering on my alma mater, or mastering mahjong. So I was excited to see that my doctor approached my treatment the same way.

She took her time, explaining MAC and my treatment plan to me in a way that I understood. She helped me understand what to expect with multidrug treatment and why I needed ongoing monitoring while I was on treatment.

We also discussed what the plan would be if I was still testing positive for MAC after at least 6 months of multidrug treatment. I'm so glad we mapped out a schedule and a plan together right from the beginning.

She showed me how I could access my sputum test reports online and encouraged me to reach out to her with any additional questions. It was a relief to have a doctor who saw me as a whole person. She wanted me to test MAC-negative as much as I did.

Speech bubble icon
That's when I realized how much of a difference a strong doctor-patient partnership could make.

She patiently answered all my questions, and when I continued to test positive for MAC after more than 6 months on multidrug treatment alone, my doctor could tell I was discouraged. Although I understood the plan was for me to add ARIKAYCE to my multidrug treatment, I had a lot of questions about taking this treatment, and any potential side effects I may experience.

When I left her office, we had a plan. I felt like she really wanted me to be successful. I said to myself, "I can do this."

ARIKAYCE is used to treat a limited group of adults with difficult-to-treat MAC lung disease in combination with multidrug therapy.

For more information about possible ARIKAYCE side effects, click here. If you have questions about side effects, be sure to speak with your doctor.

When I got my first MAC-negative test, I couldn't believe it. I think my doctor was just as excited and happy about it as I was! After all, we did it together.

In a clinical study, adding ARIKAYCE to a multidrug treatment helped 29% (65/224) of people with difficult-to-treat MAC lung disease test MAC-negative at 6 months compared to 8.9% (10/112) of people on a multidrug treatment alone. After 6 months, people on ARIKAYCE did not see an improvement in their 6-minute walk test and St George's Respiratory Questionnaire measurements.

Even now, my doctor remains highly engaged, caring, and supportive as I continue the plan we have made together:

  • Staying on ARIKAYCE and multidrug treatment for 1 more year after my first MAC-negative result (to help make sure the MAC bacteria are cleared from my lungs)
  • Continuing monitoring and sputum checks
She also shares any new
information she learns
about MAC lung disease to
keep me up to date.

Looking back now, I realize it has made all the difference in the world to have a doctor who supports me every step of the way.

MAC lung disease can be challenging, but I learned that having a great partnership with my doctor can help me face the challenge.
-Julie, a real patient
julie, a real patient
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    • IMPORTANT SAFETY INFORMATION INCLUDING BOXED WARNING AND INDICATION ARIKAYCE is associated with: risk of increased respiratory adverse reactions including allergic inflammation of lungs, coughing up blood, severe breathing problems and worsening of COPD.

    ARIKAYCE can cause serious side effects, including:

    • allergic inflammation of the lungs. These respiratory problems may be symptoms of allergic inflammation of the lungs and often come with fever, wheezing, coughing, shortness of breath, and fast breathing
    • coughing up of blood (hemoptysis). Coughing up blood is a serious and common side effect of ARIKAYCE
    • severe breathing problems. Severe breathing problems can be symptoms of bronchospasm. Bronchospasm is a serious and common side effect of ARIKAYCE. Bronchospasm symptoms include shortness of breath, difficult or labored breathing, wheezing, and coughing or chest tightness
    • worsening of chronic obstructive pulmonary disease (COPD). This is a serious and common side effect of ARIKAYCE
    • serious allergic reactions. Serious allergic reactions that may lead to death have happened to people who take ARIKAYCE. Stop taking ARIKAYCE right away and get emergency medical help if you have any of the following symptoms of a serious allergic reaction: hives, itching, redness or blushing of the skin (flushing), swollen lips, tongue or throat, trouble breathing or wheezing, shortness of breath, noisy high-pitched breathing (stridor), cough, nausea, vomiting, diarrhea, feel cramps in your stomach area, fast heart rate, feeling light headed, feeling faint, loss of control of the bowels or bladder (incontinence), and dizziness

    While using ARIKAYCE, these side effects may become serious enough that treatment in a hospital is needed. Call your healthcare provider or get medical help right away if you have any of these serious side effects while taking ARIKAYCE. Your healthcare provider may ask you to stop using ARIKAYCE for a short period of time or completely stop using ARIKAYCE.

    Do not use ARIKAYCE if you are allergic to any aminoglycoside, or any of the ingredients in ARIKAYCE.

    Before using ARIKAYCE, tell your healthcare provider about all medical conditions, including if you:

    • have asthma, COPD, shortness of breath, or wheezing (bronchospasm)
    • have been told you have poor lung function
    • have hearing problems, such as ringing in your ears or hearing loss
    • have dizziness or a sense of the room spinning
    • have kidney problems
    • have neuromuscular disease, such as myasthenia gravis
    • are pregnant or plan to become pregnant. It is not known if ARIKAYCE can harm your unborn baby. ARIKAYCE is in a class of medicines that may be connected with complete deafness in babies at birth. The deafness affects both ears and cannot be changed
    • are breastfeeding or plan to breastfeed. It is not known if the medicine in ARIKAYCE passes into your breast milk and if it can harm your baby. Talk to your healthcare provider about the best way to feed your baby during treatment with ARIKAYCE

    Tell your healthcare provider about all the medicines you take, including prescription medicines and over-the-counter medicines, vitamins, and herbal supplements.

    ARIKAYCE may cause serious side effects, including:

    • hearing loss or ringing in the ears (ototoxicity). Ototoxicity is a serious and common side effect of ARIKAYCE. Tell your healthcare provider right away if you have hearing loss or you hear noises in your ears, such as ringing or hissing. Tell your healthcare provider if you start having problems with balance or dizziness (vertigo)
    • worsening kidney problems (nephrotoxicity). ARIKAYCE is in a class of medicines which may cause worsening kidney problems. Your healthcare provider may do a blood test to check how well your kidneys are working during your treatment with ARIKAYCE
    • worsening muscle weakness (neuromuscular blockade). ARIKAYCE is in a class of medicines which can cause muscle weakness to get worse in people who already have problems with muscle weakness (myasthenia gravis)

    The most common side effects of ARIKAYCE include: changes in voice and hoarseness (dysphonia), cough during or after a dose of ARIKAYCE, especially in the first month after starting treatment, muscle pain, sore throat, tiredness (fatigue), diarrhea, nausea, headache, fever, decreased weight, vomiting, rash, increased sputum, or chest discomfort.

    These are not all of the possible side effects of ARIKAYCE. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

    What is ARIKAYCE?

    ARIKAYCE is used in combination with multidrug therapy for adults who still test positive for MAC lung disease after at least 6 months on multidrug treatment alone.

    ARIKAYCE was approved by FDA using the Limited Population pathway. This means FDA has approved this drug for a limited and specific patient population, and studies on the drug may have only answered focused questions about its safety and effectiveness.

    ARIKAYCE was studied in adult patients. It is not known if ARIKAYCE is safe and effective in children younger than 18 years of age.